Back Again! Back Pain Support Thread

[PavlovtheCat]

Only right I start the new one seeing as I was responsible for the last one ending so abruptly !

This is a support thread for people with back pain (that does not even cover the description of hell that back pain causes). It's for all types of back pain, for long term posters with chronic pain (including those on the upwards journey to recover), short term advice through tough acute episodes and all the in betweens.

We moan, winge, share successes, guide each other and hand hold through the maize of a million medical routes and options, treatments, investigations. We internet shop as a form of pain relief, drink wine, take strong painkillers, eat cake and we go through lots of heat packs!

We don't always have the answers but we do have a lot to say about it all

Here are the links to our previous threads:

www.mumsnet.com/Talk/general_health/1871592-The-Back-Story
www.mumsnet.com/Talk/general_health/1992406-The-Back-Story-Continues
www.mumsnet.com/Talk/general_health/2023274-More-Terrible-Back-Stories

I have a list of things I will question my GP with when I go next week. I am seeing a senior GP. Will ask him about slow releasing tramadol, codeine, anitriptyline and butrans patches. Surgery? X-ray? And referral to another specialist

I called the pain clinic yesterday. Asking for an appt to see the consultant. I was told no. I have to wait for the pain clinic nurse to call me in three months to see if my spinal injections have worked! The answer is a big fat no they haven't worked and if anything have made it worse!

I do have two distinctly different types of pain. One sciatic type pain going down my bum. Down my leg. Sometimes into my groin and pins and needles in my foot and a severe back pain which is worse upon movement, sitting, standing or just doing anything other than laying down! So I assume one is from the SI joint and the other from the disc. I just need pain relief from the back pain so that I can do a little more without so much pain all the time

I have a very similar pain pattern to you. The consensus from some very senior consultants is that the leg pain is caused by nerve damage and compression from the disc surgery. The back pain is mostly caused by muscular spasm and dysfunction, hence it moves around. It's bloody painful whichever way you look at it. Also why heat is so helpful.

Runs away to look for hottie....

Ok, limps away

Msdj, are you taking a super string form of paracetamol with that gabapentin? And omeprazole?
Sorry to hear you're suffering.
What worked for my nerve pain was: the basics plus oxynorm, oxycodone ibroprufen extra

msdj snap re pain. back pain (as matilda aptly describes it as 'being hit with a cricket bat' pain) which is quite deep pain, but spreads into muscles, hip, butt, coccyx, along with nerve pain which travels through hip/butt, back of thighs, into feet/toes. I also have another pain, which currently is causing me annoyance/sadness/frustration/'pain' - a period type pain, which is deep in my spine, and emanates from there through my butt/coccyx, into my bowels, down my legs. I am sort of not able to distinguish this pain from the back/nerve as it sort of draws them both together, either that or my body has given up trying to separate it all.

And that pain is worse than all the other pain after standing/sitting/walking up and down stairs/pushing n pulling heavy doors (training in a basement with no lift so a flight of stairs and a looooong walk with a ton of security doors to get out/to my office/the toilet/the lift, or 3 flights of stairs and a long walk to my desk/the toilets/the lift). I worked out I went through doors around 18 times today, ascended/descended stairs around 12 times, and walked the length of the whole (big) building 8 times. AND. I got the bus to, and from work, as it was lovely weather, I didn't want to rely on DH, I was ready before he got back to give me a lift. It is 5 mins walk to the bus stop (should be 2 mins but I am slow at walking as we all are!), 10 mins wait as I missed a bus, 5 mins on the bus, 5 mins walk to work, then all the other stuff, then the same journey home. Followed by a walk to the park, shops (5 mins) and home again (10 mins in total approx, and pushing the children in a go-cart in the park.

Needless to say. I fucking hurt. DH is not here to sort my hottie out. Boo, I got to walk down a flight of stairs to get it, and I hurt too much

But. I had a good day at work. A crisis/risk issue that needed my attention, took me out of my training (hence the million ups and down stairs, doors and lifts etc) and, well, not sure I should revel in risk crisis management, but I do (as long as it does not/hasn't gone wrong) and it took my mind of the pain, and I did a good job and felt useful and good at my job. I realise now just how much distraction, for me mental distraction, helps me manage the pain. I am sure I don't want a day like that every day due to the pain (and it's stressful, adrenaline etc) but the odd occasion is good. Hopefully, the crisis is over, and tomorrow will just be paperwork

justwondering I take 500mg paracetamol x 8 per day

matilda. Did you have disc pain before the op? What does disc pain feel like? And is the pain just around the disc?

pavlov I don't know how you manage to work. I am physically not able to. My pain is just too severe. Maybe if the pain was managed more. I don't know even if I could because I still feel doped up all the time

Heat helps massively. But I still get a severe burning pain through it when I am walking

msdj I manage because I have used up 4.5 months out of my 6 months entitlement this year! (although 9 weeks of that was post surgery/post op recovery). And, very flexible employers, a huge amount of adjustments, painkillers, and, funnily, my colleagues are now being super supportive Today, a colleague got me a seat in training, offered to get me lunch/coffee while i dealt with crisis (some of which took my lunch break), another colleague gave me an emergency spare heat patch as I was stiffening up and increasing pain sitting down too long in training, offered to take my specialist chair down to the basement for training, another carried my coffee, told me to uncross my legs, offered to carry my things back upstairs (most of this was one colleague in particular from my old (current but due to change at end of the month) team) Others on here have heard me moaning about the lack of within team support due to resentments, but we have had a change of structure, and despite fears due to change, it has lifted spirits, oddly and people are being 'lovely'. My boss checked I was ok standing at one point in the training.

I refuse to give in. But, there are times when I just want to stop working, when I want to give in and stop, as mornings are bad, evenings are bad, my daytimes are the best for me, and work gets that best of me. It makes me sad sometimes. But, largely I enjoy my job and it's not just about the money. I feel happier in myself since my decision to be more 'at peace' with everything and being back at work after 4 weeks off. again.

But, I would not go so far as to say my pain is managed. I guess it is to an extent, but it's firefighting and when I am having an ok period like now, which means I am around 4/10 pain in the day, 6/10 at night, I can bear it. When I am at the beginning of/during a lapse, I can't see me ever keeping my job long term.

I don't mean that to sound like those who are not working have 'given up' that sounded quite smug I am in reality hanging on to my job by my fingernails, but helped along with sheer grit on my part to not accept this is over yet, and HR/line managers who have been prepared to fight my corner. My old boss who has a disability herself popped up a couple of days ago, marvelled at my new desk (still the subject of intense interest) and told me I needed a perching stool and it can be paid for out of the 'assisted solutions/assistance to work' fund (government paid fund i think to support disabled people to remain at work). Next day, my boss said as he passed 'i have spoken to [old boss] who insists you need a perching stool, I will talk to you about that in supervision, we'll get that arranged'. Still fighting my corner.

I loved my job too. But they wouldn't keep it open for me. So have dismissed me on the grounds of sickness. This week is the first time in 14 months that my pain has been semi under control. Although I am having to up my Gabapentin it is helping the nerve pain but I still wouldn't be able to work. I can't physically sit for very long without severe pain I can't drive too far as I can't concentrate and I get dizzy at times. I feel pretty useless at the minute. And have been made to feel that way at times. Problems at home really aren't helping and I do find that if I am down/uptight/stressed/worried/scared/nervous/angry/upset then the pain does get a lot worse.

Well done you for sticking at it and well done for your work circle helping you too. Not many would be that kind

msdj I am sorry your work didn't hold your job for you. That is horrible for you and I am sorry that things are not supportive for you at home either. It is so much worse to be in pain and not have somewhere to reliably turn. We are though, on here, we always support, even if we are quiet for a few days (rarely for me, I can't bear to be without you all here, this is my sanctuary).

this is pretty much my desk at work for you matilda as you asked for a linky, there are smaller versions, if you google 'height adjustable desk' or 'electric desk' or 'hydraulic desk' you will find some similar without the curve/hugeness.

I am quite alone now. Lost a lot/most/all of my family and friends. As my partner keeps saying I stay in my bubble, he says I am now introverted and depressed. He is right I am. I have no one. Just my pain.

Sorry. Think I have pmt tonight. Done nothing but cry for the past few days. But as I keep saying. Lots of other problems at home. All come at the wrong time. I have enough worries as it is

Of course you are in a bubble! you have to take a shit ton of meds to stay on top of the pain to even a barely manageable degree, and it still fucking hurts, without everything else that alone takes you into yourself, as it's hard to manage everything around you when you can just about manage yourself. And, depression is certainly not unusual when we are faced with huge difficulties in our lives.

and you have us. now we might just be strangers on the 'net, could be hairy truckers for all you know (matilda is not hairy or a trucker, I met her already ) but, we do understand, when things feel low and you don't know who gets what you are feeling, we all do here. We all have different issues going on with our back pain, but we know how isolating it is, how our friendship circles shrink, that no-one really gets it, even when we do have support in RL. So, although we can't actually hold your hand through this, we make very good virtual and drink good and we find internet shopping helps us a lot. So use us. You are one of us now, whether you like it or not your back has made you part of a unique club of hardcore back pain sufferers

Thank you for being so kind. In floods of tears at the minute so the words are all blurry. Will log off and try to get a little sleep. Haven't had a full nights sleep for over a year now. I can but dream that one day I will be able to sleep right through again

Sweet and pain free dreams all x

this is the big problem that I have with how long it takes to convince doctor there is a problem, referrals to somewhere that is not always the right place, referrals elsewhere before we get to where we need to be, then more waiting, during this time more painkillers, and our lives slowly slowly crumble away. These processes do not take into account that we are not just patients to be managed, we are people who, when we leave the appt, the surgery, the clinic, have to continue facing our issues daily, hourly, each minute, and there is no consideration given to the impact that has on us, our ability to keep our jobs, to hold our relationships together, to parent as we want to be able to, so keep our social circles and so there is on urgency. And the level and direction of care and treatment varies so starkly from one nhs area to another, to another, there is no real formula after paracetamol/opiates/nsaid/nerve painkiller.

I hope you get some sleep. Is your lack of sleep/problematic sleep pain related?

msdj just another thing before you go to sleep, or to read in the morning. As you add your doses to the gabapentin if you do increase, add them to the night one first, so 300mg to that one. And if you are ok with the morning grogginess, talk to your GP about changing some of your dose to the night time, so maybe 300mg am, 100/200mg mid morning, 400/500mg at night? As a side affect is sedative properties. Or talk to him about amytriptiline (either instead of, or to replace the night dose of gabapentin) as my pain clinic nurse said that this is used for both nerve pain and the additional properties of it being a good sleep inducer. It's almost impossible to manage pain properly when you are exhausted. You need to sleep to recover, and if you are not sleeping, the negative of pain, no sleep, exhaustion, pain no sleep, exhaustion is impossible to break. Once you can get a handle on your sleeping, you may find it a little easier to cope with the pain levels while you learn to manage them. I think matilda takes both, one at night, one in the day, and she may have already told you this

Msdj - sorry things are so bad. I get very low too and while I have depression anyway the back makes it so much worse. It's very isolating and hard when people don't understand or aren't willing to make adjustments to accommodate your needs. It's a bit of a vicious circle, both the pain and feeling low. No longer working because of it must be a little soul destroying, work can be a big part of our identities and give us self worth/value and build our confidence and self esteem. I have found doing some study, reading and crafts helpful in giving back some form of identity and me time. I must get back into these things myself. And it's helpful because you can do as much or as little as you can manage with no pressure. I'm sure my girls are a big motivator and keep me moving, I have no choice but to cope and do the minimum at least. I have a teeny bit of voluntary work too and that keeps me feeling like I am a bit useful and not completely incompetent.

(amytriptyline is also a seratonin booster, as is tramadol to some extent. Although I shan't say I am positively bouncing around with happiness every second of the day, I suspect it's helping my mood even if the low dose I take every day does fuck all for the pain )

Morning all. Sorry about last night. Rough time at home. What with the pain and all the every day problems just got to me. But today is a new day and I feel sick as a dog. Is that caused by the upping of Gabapentin? Wouldn't the omeprazole? Or is it because I cried buckets last night?

Morning, msdj. So sorry you're been having such a shit time. Re. feeling sick, omeprazole can definitely do that to start with - have you only just been prescribed that? Made me feel very nauseous for the first week or so I was on it. I don't know if the gabapentin could be a factor - no knowledge on that one!

I spent a lot of Tuesday crying too - it must be going around. Worst leg pain ever - like the whole fucking nerve pathway was on fire, from my bum down to my ankle. Nothing was touching it, no position was helping.

I've never been this bad, & I can't believe it's a coincidence that this has all happened after the nerve block injection. But how could it do this? Just irritation of the nerve root, or is my body not liking the steroid? I don't understand. It's a week now & I'm still so much worse than I was.

My back is, as ever, not as bad as the leg, but it's not happy, & I have loads of muscular tightness / aching going right up to the shoulder-blades. I know some of you get this - is it like some sort of chain reaction? It's not sick-making pain like the leg pain, but the end result is that my entire body hurts & I'm beyond pissed off.

Morning ladies. Sorry there are a lot of you feeling so low. loon as I said I had a very similar experience a few weeks back. It did settle after a week or so. I hope the same happens for you. Can you rest a lot? I think I did a lot of lying down even by my standards.

msdj. You will get better than this. Read back to when you joined us here. You have already made a bit of progress. I agree with adding amytriptiline soon. I take 600mgs of gabapentin at 8, 1and 6 then 20 mgs of amytriptiline at night. It does indeed make me sleepy. I'm also wondering if the tramadol is disrupting your sleep. It very much does for me so I never take it in the evening. Have you tried cocodamol 30 instead? It works roughly to the same extent for me.

It is depressing to be so disabled with pain. But it doesn't have to be totally your life. I, too was fired for ill health. It was gutting, I'd been there doing a fucking good job for 25 years. I have tried hard to be accepting of that and to move on. I have an absolute rule that I shower, do my hair and put on makeup every day. For me. I don't want to look as crap as I feel and it raises my spirits a little. You have your bubble, I have nests. I suspect they are much the same thing. I've got nests around the house so I'm not always hidden away in my room and get to communicate with the family. I also text friends a lot and have friends in or ask them to take me out. Try as hard as you can to do things. Just little things. I promise it helps. You will take your pain with you, unfortunately it tags along but you can focus a little on other things and ignore Mr Pain for a while. Listen to the radio, mess around here.

Hoe that's not too Pollyanna. Just trying to say your life can continue with pain there. There is always something you can do even if there are more things you can't do.

Kegs posting. We get it. As Pavlov says! like it or not you are one of us now.. And despite what she said I dos have rather hairy legs if not strictly pruned .

Sorry. I didn't answer your question about disc pain.

I understand that discs do not actually contain nerves so don't cause pain in themselves. When they prolapse, though, they can but may not! squash against nearby nerves causing terrible pain. Often it's leg pain.

I actually had excruciating back pain. Hardly any leg pain but pains and needles etc. so the surgery was for relief of the back pain. I was ill with it. Wasting away.

But, sadly the surgery was bodged didn't go well and I ended up with severe leg pai and weakness plus severe back pain. Like you they are separate things although closely related.

So, it's possible to have prolapsed discs with no discomfort if not impinging on any nerves and also possible to have varying symptoms as we all have here.

all the steroid shot people.There is a recognised phenomenon that steroid shots make some people worse before they get better.it's am actual thing and I was warned about it before steroid shots in my shoulder.can't see why it wouldn't apply to any steroid shot.on my phone will try and find a link later. for all, . I'm back at work Monday. I'm not fixed but I'm good enough.decided to pay for physio starting this afternoon. this is the cleaner money I had allocated in the budget.I'm not convinced I have made the right choice.time will tell

denial that's interesting about the steroids. Think I got the worse bit but not the better. I'm awkward. Glad you're able to get back to work. Is it ft? Hope it's ok.

msdj just one more thing. You have every reason to be hopeful about your pain control because already you are feeling the benefit of gabapentin. I started on 300x1/ day and inside a week was up to 300x3/ day plus amytriptiline at night. If you can get to this I'm pretty sure you could reduce your tramadol. The reason you are needing such high doses yet still have pain is that it's the strong type of pain. Nerve pain is highly specific and does not respond especially well to opiates or opioids. Even high doses. So have hope, it can get a lot better than this.